e-Patients Blog
The blog of the Society for Participatory Medicine. Want to be a contributor?
Beth Israel Deaconess FAQ for their patients reading OpenNotes
Clarification 9/7: The FAQ posted below is of course authored by my hospital, not by me. Several people misunderstood so I edited this and the headline. On Wednesday I posted about the roll-out of OpenNotes to over a million patients and families. That post arose when...
The OpenNotes project goes wide: a million patients and families enabled by information!
Updated Sept. 6: I'd forgotten that as we posted in June, Cleveland Clinic announced open access too, adding a half million patients to the total. Big news is emerging from the OpenNotes® project: big institutions are making patient access to the medical record...
Health Plan Member Engagement and Empowerment Index: The EveryMove 100
There's a new index in town. This week's entrant is the EveryMove 100, a ranking of health plans across the US "based on how they engage with and empower consumers to manage their own health." according to the presser. (EveryMove is a health rewards based marketing...
Screw HIPAA: Here’s a Look at My Doctor’s Office
A few months ago, I complained about the layout of one of my doctor's offices. There's a rough layout drawing of the office waiting area to the side there. I'm standing just in front of the number 1, while people are sitting along the wall behind me. Do you see the...
Erin Moore’s speech: What if CF had a Collaborative Care Network?
SPM member Erin Moore (@EKeeleyMoore) is one heck of an activist parent. She sees the future, she has a stake in it - a kid with a chronic disease - and like many of us, she's not waiting around for someone else to make it happen: she's engaged in creating the future...
Rheumatoid Arthritis Ruined Her Elbow, But Nothing Could Break Her Hope
SPM member Kelly Young is one of the most spectacular, potent, world-changing e-patients I've ever seen. (See our many posts here about her activism.) Aside from all her work on RAWarrior.com and her Foundation, see how she uses this case to teach. Peer-to-peer...
Resources for health literacy
Guest blogger Kathy Kastner gives us an overview of the health literacy resources on the Internet. It is an important topic – how can patients be engaged and participatory if they don’t understand what they are told? Kathy Kastner is Blogger and Curator...
That is a Real Doctor
Guest blogger Peggy Zuckerman tells us a story about a young competent doctor and how transparency and openness is key to giving better care.  Peggy Zuckerman never intended to be a patient advocate, not even a patient! But after her diagnosis with a "tiny,...
“I’d be 400 years behind” – updated, bigtime
One of the most-quoted eye-opening quotes in "Doc Tom" Ferguson's e-Patient White Paper is this: As Donald Lindberg, director of the National Library of Medicine, explains, “If I read and memorized two medical journal articles every night, by the end of a year I’d be...
Peer-to-peer health care is a slow idea that will change the world
"The most exciting innovation of the connected health era is…people talking with each other." This is the essential point of a post that is garnering some great comments on my personal blog. I weave together concepts I developed in my work at the Pew Research Center...
Monthly introduction to e-Patients.net
This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn.  Here's how to become a Society member, individual or corporate. Our publications: This...
What I Wish I’d Known Earlier…
This summer, I am reflecting and writing about what I wish that I had known earlier about getting good care following active cancer treatment, based on my experience with five different cancer diagnoses and what I have learned from others. If you have been diagnosed...
